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do people yawn when you say "arthritis"

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Posted 6/8/2010 6:53 AM (GMT 0)
Hello,

I have been dealing with some problems and was diagnosed this spring with reactive arthritis. I have noticed that when I mention to people that I have "a form of arthritis," they don't act overly concerned and just move on as if I had said I have a cold or something.

Sorry, but even though I am in my late 40s, I do feel very upset because just 2 years ago I felt perfectly healthy and youthful. Now I am having a lot of pain and stiffness and have had to cut back on a lot of things I enjoy. It's depressing!

Not that I am looking for sympathy, but I wonder. Is this pretty much the response I can expect from people? Should I just be quiet about it to avoid feeling let down by people?

--MK
Posted 6/8/2010 7:25 PM (GMT 0)
I feel the same way. Specially at work...Like my boss does not understand that this is a serious condition and I am always in fear of losing my job! Its not easy to wake up in pain and kind of have to work at it to be able to get to work. Its hard! But all he see's is his employee being late. I totally understand his side but I wish he could understand me a little better. If I loose my job then im out of an insurance with no possiblity to even get treated! Even with the meds I take now I still have side effects to deal with! Its sooooo frustrating sometimes. Anyway. Just thought I would vent! lol

Claudia
Posted 6/9/2010 9:59 AM (GMT 0)

Daisysmom.

yeah I had to laugh at your posts title yeah - so true.

A lot of people have no compassion for things they cant see with their own eyes - unless you have visible inflammation and then you my get an 'oh' out of them :-)

I find I get more compassion from people when I tell them I have Crohn's Disease and describe what that is to them - you see nobody wants to sit on the toilet 20+ times a day, but when you say RA they are happy to tell you about some little pain they are having that day eyes

Thanks for the giggle from your title smilewinkgrin

Jo

Posted 6/9/2010 3:08 PM (GMT 0)
Good Morning!

I'm usually on the lupus forum but I was surfing through the other forums and saw your post.  I was diagnosed with Lupus in March 2009 based on 3 symptoms by my rhuemy.  I still really think it's RA because of my family history, but whatever,  you know that many of the symptoms of autoimmune disease crossover.  Anyways, I can sooooo relate to how you feel.  I was the most active 48 year old ever and now every day is uncertain as to what I wake up with.  Used to only take a tylenol for something and now have a drawer full of crap to take everyday.  If you think about it, I think that many of us didn't understand how arthritis felt until we had to deal with it.  Always thought it was an old people's disease and that it was an excuse to get out of doing daily activities.  Boy, do I eat my words now.  I want to know who stole my body!!  I try not to say to much about it to my family and friends, cuz I really don't think they get it.  I don't want to sound like I'm complaining all the time but it really stinks when someone asks me to commit to do something a week from now and I'm afraid to say yes because I'm not sure if my body will allow me to take part in it.  I just want those individuals who look at us and think that we are complaining about a little stiffness to live in our bodies just one day when it's flaring bad and see if they change their tune.  But, what can we do but live it everyday and hope that each day is a better one.  Hope you are having a pain free day!!

Hugs and Angels,

Lynnette

Posted 6/10/2010 1:09 AM (GMT 0)
Yup totally relate. I think most people think of osteoarthritis and associate it with the aged. Not many people know what RA is about or how debilitating it can make you feel. My work has been wonderful over the years and totally help me out when I'm flaring but we went on a massive learning curve together, I had no idea how badly it was going to impact on my life. But you all adjust.

I simply don't bother telling people I have RA, just ask for help opening things and say I have weak hands. I just don't go down the RA route. When I need to wear my splints I just say its carpel tunnel, people can relate to that!

Its because we look so healthy and we can have good days, they can't see our pain. therefore it doesn't exist! Not easy is it. It is a really depressing disease but I'm dind a course right now run by an RA drug company on empowering the patient!!! So the idea is you take control of your disease rather than it controlling you. I'm enjoying it so far if only to meet up with others in a similar state with very similar frustrations. One of the first things we talked about was how people don't understand what RA is and start telling you about their sore little finger or sore knee or something. We all laughed becaus we we all have been there.

Good post, golitho
Posted 6/10/2010 5:32 PM (GMT 0)
This is exactly why the name Rheumatoid "Arthritis" needs to be changed to Rheumatoid Autoimmune Disease.

80% of all people will get osteoarthritis at some point in their lives- us included if we don't already have it.

I'm sorry- but arthritis pain is not the only symptom or complication of RA! In fact in somewhat controlled RA that's the least of it for me. I have fatigue and have more pain in what I would say are my bones then my joints! I have clumsy hands from slight undetectable by the human eyes inflammation. The way I am feeling changes all day long every day. There are no predictions. My eyes and my mouth are dry probably from sjogren's caused by the RA. My brain is foggy from the MTX.
I'm sure osteo is no picnic but it can't affect your heart, lungs, etc. etc. etc.....

RA- it's not your Grandmother's Arthritis. Hey- that's a good T-shirt slogan don't ya think?
Posted 6/11/2010 4:55 AM (GMT 0)
WearyRa,

yes, I think that's a good slogan.

The real eye-opener for me was going to the arthritis clinic, which has half a dozen doctors, pretty big for our area. You see the people that come in, and very few are elderly people. You can see the problems they have. Hardly a minor issue.

just since I started this thread a couple of days ago, I was at work, and I got up from my desk and was limping pretty bad from stiffness. Somebody there who hardly ever sees me (because I work at night) was like, oh, did you hurt yourself. Well... I didn't want to go in the long and boring. So I just said, oh, I'm stiff when I have been sitting. But I limp like that a lot at work, and in the morning at home. But oh, it's "only" a form of arthritis.

It's weird, because the doctor says, on a scale of 1 to 10, how bad is your pain. And really, it is probably like a 2 most of the time. But what sucks is it is all day long.

--mk
Posted 6/11/2010 6:11 AM (GMT 0)
Hi all

I agree totally with what you have all stated. The fatigue gets me too, I have to have a rest each afternoon, luckily I am retired and can do that, but I am only 56 so I would hope that I have a lot of years in me yet. The pain also gets me in the hands, shoulders and arms, some days I wish I could rip them off.

I also don't complain too much because I fear I will be labelled a "whinger" so I just say the same thing, that I am a bit stiff or a bit sore.
I also thought it was something you got when you were like in your late 70's or 80's not when you were 51 years of age.

But then I think there are hundreds if not thousands worse off than me, even on this forum, so I feel bad then for complaining.

It's nice to be able to speak to others who know and understand the pain.

Hope tomorrow is a much better day for all.
Posted 6/11/2010 4:47 PM (GMT 0)
Daisymom- you hit the nail on the head- my pain levels are low too- but the all day long of it wears you out! My doctor just can't understand that!
He says well- you have to admit you are 100% better then the first day I saw you- well yeah- 2 1/2 years ago my husband was feeding me, carrying me up & down steps etc. when RA hit me like a freight train and yeah I AM SO THANKFUL my meds turned me around and I go to work every day and take care of all my personal needs but before it hit I was a 47 year old who GOD HONEST TRUTH felt 25 and I would just like to feel well again.......
Posted 6/12/2010 1:56 AM (GMT 0)
"most of the time its only like a 2...."

What I find is a 2 on my scale may be a 7 on a healthy persons scale.

I have heard people-almost everyone that has experienced them-say kidney stones are a ten. For me, that was a 7. I have experienced worse.
Today my OT said-if a ten means you are on your way to the ER...uhm I have been in so much pain that all I could do was lie in a fetal position and rock-and not gone to the ER. I have a friend that goes to the ER when she is still capable of driving herself. (Not implying there is anything wrong with that) I am just not sure that people are all using the same scale.
Posted 6/12/2010 6:49 PM (GMT 0)
So true, pain thresholds are different for everyone and when you live with pain daily, there's a good chance yours is higher than you realize.

I've told people I have arthritis and hear, 'oh yeah, I have that..." or "so-and-so has that" and most drop it at that because all they understand is a pain in a joint that goes away when they take Alieve. They can't comprehend I've spent 70% of the last decade sick in bed because this has really been an auto=immune disorder, not a pain in a joint. Or why I get angry when people send their sick children to school because I don't want to be the one in bed for the next 3 months because their child coughed on my child, who then brought the germs home to me. I've left 3 jobs due to long-term illnesses...I can't afford to leave any more.

So, I understand the 'let down" feeling you're talking about Daisymom. You try to open up to someone and you get ignored....even a few seconds of acknowledgement would be nice. But, when they don't know, they don't understand what you are saying to impact a response. Words like Fibromyalgia and Chronic Fatigue are so overused, even post-partum (?) depression or arthritis, that unless you've been there or someone close to you has had it - most people just don't get it....they are just words they hear over and over and over again, but have no meaning. Most people don't know what Chrons is, it means nothing....but they are all concealed diseases and people just don't get their impact on the ones who have it.

Hang in there everyone.

 

Posted 6/13/2010 1:39 AM (GMT 0)
My daily norm pain scale is about a 2-3 but before meds I was 7-8 --so yeah it is improved!!!.
BUT I want ZERO!
I want pre RA
I want to put my rings on and unscrew a bottle without askign my 13 yr old son to do it for me,.
I want to bend down and pick something up with out looking like an 90 yr old lady..( I am only 48)
I want to see my ankle bones agian, (no swelling0
I want to come home after working all day and not have to sit and ice my feet.
I want too much i guess...
Posted 6/13/2010 3:49 AM (GMT 0)
I want to pull files from a drawer.
I want to walk down the stairs like an adult-instead of the toddler walk.
I want to have only one doctor-who I never see-instead of four who I see way too often.
I want to hoard sunshine instead of prednisone.
Posted 6/13/2010 6:51 AM (GMT 0)
Ditto to you both!
Posted 6/13/2010 7:41 PM (GMT 0)
i've had Reactive Arthritis for the better part of 10 years now (5+ years where it was obviously and severely active, when I knew what it actually was) on top of severe chronic pelvic pain syndrome (bad damage to my lymph system and reproductive structures from a series of staph infections that triggered the ReA)....and sadly, I know all too well what you mean by the "yawn."

Nobody gets it except for fellow sufferers. It isn't just the severity of individual pains and aches and spasms....it's the never-ending list of dozens of them all over my body, the mind-bending effects of constant severe groin pain (which is different than any other pain, because your brain keeps telling you "this is a critical injury that could prevent you from reproducing -- YOU MUST DO SOMETHING about IT RIGHT NOW!!!" and that slowly drives you crazy from restlessness, insomnia, agitation, and other subtle feelings that there are just no words for), and the grinding down of one's soul that happens when such pain in constant for years and years on end.

Having to tell my young children that I can't do something is the worst part. That look of disappointment and frustration on their faces.....soul-crushing.

All anyone sees of my condition are the grunts and groans (which aren't "proof" of anything, and I keep in check because my son copies me and it's depressing to hear him making those noises -- one of my worst fears is that he'll develop the same condition(s) someday), and the things I say I can't do. They don't feel it, they have nothing to compare it to no matter how severe the short/medium duration pain they may have endured in their lives from surgery or whatever.

People just don't get it that constant severe pain for years on end is completely different from suffering even the most horrible agony for a few hours, days, weeks or even months.

ReA is also unique because you are always in fear of contracting another infection or pathogen that may not be severe on its own, but will send you into a wretched flare for an indefinite length of time. Having little kids is particularly difficult in this respect.

You are far from alone.
Posted 6/13/2010 8:04 PM (GMT 0)
Wow. Well spoken!

I was put on bed rest for 6 months when my children were 18 months and 3 years old. I wasn't allowed to pick them up because of an enlarged spleen and liver. Sometimes, my husband would put them on my lap for a few minutes. It was heartbreaking.

It is so frustrating to be so limited when you don't want to be, it's even worse to feel like you are disappointing your children when you have to cancel things over and over again because you won't be able to walk, let alone function and do what/whereever it is you said you'd do or take them.

Posted 6/14/2010 11:54 PM (GMT 0)
Thank God my kids were grown before I got this. I feel for all of you trying to raise young families with this disease.
Posted 6/15/2010 12:27 AM (GMT 0)
I get this when i say I have Arthritis....."no, you cant have arthritis, your way too young."  To which  I reply "news flash, arthritis is not just for old people!".  I have had arthritis since I was 2 years old.  It's Technically called Juvenille Rheumatoid Arthritis.  But I like to refer to it as UGH. lol.  Thats the best word I can think of to describe peoples yawns and stupid comments.  Also it describes how I feel some days when its slow going.  I just love when ya tell someone and they say, oh i have arthritis in my hand and it hurts so bad.  I automatically reply "OK well try having it in every joint of your body for the past 34 years and tell me if ya think its the same."  I'm not a rude person but sometimes ya just gotta let people know its a serious thing and it would be nice if they try to understand.

 

Ok just venting out my thoughts on the yawners.

Niki

Posted 6/15/2010 12:51 PM (GMT 0)
Hi Niki

That was an excellent vent for all of us with RA. I feel for you and the others that have suffered all or most of their lives. I can only imagine how hard it must be to be the mother of tiny ones and suffering with RA, thank God my two had grown up when I got it.

It is certainly a true old saying "there is always someone worse off than you" and after reading some of the posts on here and on some other sites, I don't think I will be doing too much complaining in future.

I hope tomorrow is a better day for everyone with RA, keep up your spirits and keep posting.
Posted 6/16/2010 9:47 PM (GMT 0)
This is a great post! It is an invisible disease! What I hate most is being compared to my 60 something MIL shakehead The last time I was down for a visit, she said it was hard for me to keep up with her!! I'm 39, and what is the saddest is that she is right! She can walk a lot quicker than I can, and when we are out and about I do have trouble keeping up!

The last time I went grocery shopping, I used the Handicap Placard, and as I was putting my groceries in my trunk a much older couple walked by and as they passed the older man said to his wife, all these people (pointing at the cars parked in the handicap spots) are too d*** lazy to walk into the store mad   That is hardly the case, and you have to have a legitimate medical reason to even have a placard in the first place.  It really made me angry to hear him say such a thing. It was said so I would over hear.  Many people have invisible diseases such as MS, Lupus, RA, etc, it is a shame that some individuals are so narrow minded and uninformed.

Someone brought up a good point, the fact that the pain is never ending!! it is truly an all day event, there is no getting away from it.

 

Posted 6/18/2010 9:33 PM (GMT 0)
I enjoyed reading everyone's post on this topic! It's like we have our own Society here where we understand each others battles. I just joined this week and I have already met such wonderful people here!

 

I know all to well how you get treated when you tell people you are sick. I'm not able to work any longer, but I had co-workers that doubted me and it was very difficult. But worse than that, my own family doubted me!! I was accused of having an addiction to pain pills. In fact, my family was planning an "Intervention" 6 mos. ago!!! Like the tv show! I watch that show w/ my teen! And the people on there can't even function most of the time! Yes, They need help. Me....No! You gotta be kidding me! I had even been diagnosed with FMS, RLS, Pernicious Anemia, & Facet Joint Syndrome (w/ arthritis @ L4, L5, & S1) and complained that 4, 10mg Lortab a day would only help for a couple of hrs.  So that made me an addict. Not only in my immediate family- my own husband was starting to question me (and his parents did also.) At one point he even thought that I was complaining too much and was looking for attention!! Who in their right mind would need attention so badly that they would fake an illness for months on end in order to get it? And further more what does that say about my character? Did he really think that I was in need of negative attention at 34 yrs. old?- like a child "milking" a stubbed toe?! We were still newly weds when I became ill. Maybe he thought he had a real "Psycho" on his hands?! (Like the movie Heartbreak Kid, where Ben Stiller marries that crazy chic.) He was probably thinking what did I get myself into? This woman has some issues....needing this type of attention! Lol. We had dated almost 3 yrs. before we got married, so I would hope that he knew me pretty well by then. (I do have his support now with the recent RA diagnoses.)-Thank God!

 

I felt like I had no support at the time. I was being passed around from doctor to doctor. And one doctor even cut me off, accusing me of "Doctor shopping!" - Because I was insisting on running more test. He wanted to give me pain pills and just go away! Matter of fact, he told me that my CT Scan was normal when indeed I had Facet Joint Syndrome and pinched nerves!

 

To make matters worse, my co-workers didn't believe me either. I had nowhere to turn! There was an older woman in particular who was nice to my face but I walked up one day and overheard her telling another lady that there was no way that it hurt my arm when she would smack me. (One of those people who like to tell you a story and keep hitting you in the arm saying: "You know it....or hey how about that...smack...") She's in her seventies and believes that FMS is a "make believe illness." I'd hate to know what all was said about me amongst that group of people! I left the job under terrible circumstances (Read my previous post!) And now I chase my 18 mo. old ALL day!! But I love it! And I need to stay active anyway. Since I have all my diagnoses, I am finally getting the proper pain mgmt.!! (It's no  wonder the Lortab didn't touch my pain after a couple of hrs.!!)

I have had a year long battle with trying to get diagnosed. Please read my previous post: This is a long one, but worth reading (Explains my life in a nutshell for the past year!)

 

Shann75

 

Posted 6/19/2010 6:43 AM (GMT 0)
Sadly -- downright tragically, in fact -- your experience is hardly unique, Shann. It's pretty much a badge of honor for even the most responsible and careful patients to have gone through that phase (and they're lucky if it only happens once!) where everyone around them, usually egged on by a single well-meaning but poorly-informed person, starts expressing "concern" about one's medication and/or other aspects of how they're coping with their illness.

At a minimum, even those who are relatively new to chronic pain/arthritic conditions and who may not even be on any pain meds at all (or any other "questionable narcotics"), are often put through the wringer by at least one or two people close to them in some way that relates to their condition. Often it centers around "it can't be that bad, you need more exercise and to do XYZ" or otherwise making wild baseless unscientific assumptions about what the "right thing to be doing" is.

That isn't to say such people are always 100% wrong in every case, but it's obscenely common for folks in our situation to be subjected to all this with little or no basis in reality.

I can't even watch "Intervention" because it's always something that should be private, not paraded around on TV for us to rubberneck at like some kind of car crash....and a good portion of the time, the family/friends are at least as messed up as the "addict" themselves. It just seems like almost everything having to do with the show is bad for that person, and that only rarely do you see a story (usually the rock-bottom alcoholics, it seems) where being on the show actually benefitted them.

I have quite severe insomnia, sometimes not sleeping at all (or only a few minutes/couple of hours max) for several days in a row because of my pain, hyperthyroid (yes, hyper not hypo; this is common with severe long-term chronic pain), high cortisol levels, high stress/anxiety, etc....and there was a period when it was so bad that I was frequently falling asleep on my feet in the mornings trying to push myself to help my family get out the door for the day after not sleeping for 2-3+ nights....so, my wife eventually got so bothered by seeing that happen, that she took a cell phone video of it and showed my doctor. This resulted in much hysteria about me possibly getting sedated on my meds -- which couldn't be further from the truth, I was long since quite tolerant to the doses I was on....and if anyone had actually taken my vitals during those incidents my heart and respiration rates would have proven I wasn't experiencing opiate induced respiratory depression. I was just exhausted beyond the point of all human endurance; I wasn't nodding off slumped over in a chair when I was well-rested; I was more or less passing out on my feet after 72+ hours without significant sleep.

So, I understand all too well how even otherwise reasonable and supportive people like my wife and primary doctor could get the wrong idea. I didn't exactly feel like I could argue the point since it was too late to provide that kind of proof, and I stood up for myself as best I could but it was mostly a losing battle.

I've proven myself to be responsible and trustworthy many times in many ways before and since....but the whole thing is just part of the burden that we have to bear as chronic illness/pain sufferers. Trying too hard to argue with people in our own defense just comes off as self-serving....and few people are really willing to do the research or have any sort of applicable experience to help them really understand what they're talking about when they pass judgement on us.

As for mother-in-laws....mine has her own issues to be sure, but we have the rather significant bond that we are both suffering from Reactive Arthritis. In fact, we both got it from the same infection! She had a bad kidney infection 7 years ago, was hospitalized for it....two weeks later, I had my third and final pelvic/leg staph infection which was almost certainly from the same source (my MIL is a nurse). So, even though our symptoms and progression have been fairly different, there are a lot of fundamental similarities and far more than most others in my family, she understands what I go through.
Posted 6/19/2010 6:50 AM (GMT 0)
After how hard we fight to function for our families and to be active, to enjoy life and transcend our illnesses.....it's very hurtful when people "doubt" us. Unfortunately, that happens to almost all of us at one time or another. It's bad enough coming from doctors who really don't know anything about us except what they hear in a 15 minute conversation once a month; it's far, far worse coming from someone who ought to know us well enough to understand that we'd never do the sorts of things we're being accused of.

To wring every last drop of fight out of ourselves day after day, and then be accused of not fighting hard enough or being lazy or somehow letting down the very people we're pushing ourselves to our absolute limits for.....is one of the hardest things to face about living this life.
Posted 6/19/2010 4:08 PM (GMT 0)
Oh boy! those are some intense stories!

While it's years late, misery still does love company. It is *good*  eyes to hear I'm not alone. Spending a year going from doctor to doctor, only to be told by the end of each and every 2nd visit I should probably go see a shrink and get dismissed. Biting my BIL's head off when he smirked about my "so-called pain and problems walking," having my husband question if I'm just being "a wimp" about the pain, getting yelled at when I pulled in to handicapped parking (with a placcard), and being 26 years old and always discussed in the same conversation as my aunt's 80-year-old mother.....we basically had the same trouble! ugh. It's hard to get over those moments!

But yes, concealed, invisible, whatever you want to call it....people don't understand what they can't see....and because there ARE people out there who 'milk' it, fake it, etc...those who DO want the attention....etc....and it's those people (who I think are probably far and few between) who ruin it for the rest of us.  Our families don't understand we want to move forward just like they do, but we can't when we're constantly being pulled back and pushed down by these dieseases....if I had a dime for every time I thought, "if you could just FEEL this for 5 minutes to understand...." I'd be rich.....

have a restful and pain-free weekend everyone.

 

Posted 6/19/2010 4:35 PM (GMT 0)

Thank you for the response, Exitwound. It is very hurtful to be doubted. What upset me so, was the fact that my father has several illnesses, including FMS, degenerative disc/muscle disease , chronic pain syndrome & RLS- to name a few. He often uses his wheelchair when we go to an event or anything that requires a lot of walking (he was only in his early 40's when he started to utilize a wheelchair- hard for a man's pride at that age.) So of all people, my mom & dad should have been the most understanding! (I believe the whole "Intervention Hoopla" was more my mom.) But anyway, my dad went to several doctors for a period of 3-4 yrs. before he had all of his diagnoses. And our stories are quite similar actually. But out of all people, my parents should've been the most supportive because my mom went through this with my dad for yrs. - But any whoo, I do have their support now and that's what matter most!

I feel that I am way overdue for some apologizes at this point. - I'm not holding my breath!!! But karma is a...you know what, so I sure hope that the people who treated me awful never have to deal with HALF of what I've been through!! I will say that there was a point where a couple doctors told my dad that he was just "Clinically Depressed" and it can trick your mind into thinking that you are far worse than you actually are. When I heard that I questioned whether of not that was the case. And I can honestly say that I was doubting that my dad was really in that type of pain. (He didn't look sick- We've all heard that one!) - I am not saying that "Karma" came back and bit me in the butt and I somehow deserve this. But it makes you think twice about judging others and making assumptions!!

Shann

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